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Slowed down, but never stopped

Sam Holland has a rare condition called fibrous dysplastic condition of the bone.

Sam Holland is a 7-year-old boy, which means he likes Lego and Minecraft and Cub Scouts. He likes baseball, too, although he doesn’t get to play it the same way other kids his age do. There’s too much chance he could hurt himself.

Since he was 4 years old, Sam has been finding ways to live with a rare condition called fibrous dysplastic condition of the bone, which makes him more likely to suffer breaks and other injuries.

The basics of the condition are pretty straightforward: Lesions of weaker material grow in place of normal bone at spots throughout Sam’s body. Where regular bone can take some bumping and twisting, the lesions tend to break.

So, while other boys his age could slide into second with nothing more than a few scrapes and bruises, Sam suffered his first major break from something as simple as a sibling falling on top of him as he lay on a bed. He has hurt his arm doing nothing more than trying to bounce a beach ball as high as he could.

The lesions seem to heal with stronger bone after the break, but his condition is enough of a mystery that nobody can tell when the lesions might stop appearing, or if they ever will.

Sam’s family started noticing problems when he was 3. That fall, he started limping after jumping into a ball pit, and he continued off and on for a while afterward. On Christmas Eve that year, just a few days after his fourth birthday, Sam was watching TV when one of his siblings fell on him. He went with his family to church that night, but when he didn’t want to walk downstairs to open his presents the next morning, his parents knew something was wrong. They took him to urgent care, where his broken leg was put in a cast. When the limping continued after the cast came off they took him to Gillette Children’s Specialty. An x-ray taken there showed the lesion where his leg had broken and three others elsewhere in his legs. Two of those other lesions were close to breaking.

The diagnosis has meant adjustments for Sam. He can’t play contact sports in school. He can’t jump or twist, and he has to stay away from crowds. He doesn’t ride the regular school bus because of the risk of bumping.

His mother, Kelly, has put together presentations for Sam’s classes at Rosemount Elementary School to help his classmates understand why they can’t be as rowdy with Sam as they might be with other kids.

“The hardest has been no bouncy houses,” Kelly said.

Sam knows there are restrictions on what he can do, but that’s not always easy to remember for a 7-year-old who, according to his mother, has just one speed: fast.

“He’s all boy and he likes to be in the middle of everything,” Kelly said. “I’ve seen him get frustrated because he can’t keep up with everybody.”

Still, he does what he can to avoid risky situations.

“I still be safe,” Sam said. “I only do things I like doing.”

Sam has had several more breaks since that first one. He’s taken two trips in an ambulance. He plays Miracle League baseball, and rides a three-wheeled bike because of concerns he might fall on a two-wheeler.

For now, doctors are watching Sam to see how his condition develops. He has lesions in his spine and in his skull. He has an MRI every year to look for clues into what lies ahead.

Answers are still in short supply, though.

“It’s taken a lot of soul searching on my part, and a lot of faith,” Kelly said.